Title page for ETD etd-04142009-095845

FINDING PLACE IN A “NEUROTYPICAL” SOCIETY: A PHENOMENOLOGICAL STUDY OF INDIVIDUALS WITH ASPERGER’S SYNDROME

Degree

PhD

Department

Human Development

Advisory Committee

Advisor Name

Title

Boucouvalas, Marcie

Committee Chair

Hultgren, Francine H.

Committee Co-Chair

Glass, Paul W.

Committee Member

Klunk, Clare D.

Committee Member

Morris, Linda E.

Committee Member

Keywords

Asperger’s Syndrome

Autism Spectrum

High-Functioning Autism

Adults

Date of Defense

2009-03-31

Availability

restricted

Abstract

Annette Neal-Miles's Abstract

In 1944 Hans Asperger, a Viennese physician, identified a neurological disorder which hinders a person’s ability to communicate and interact socially. Lorna Wing’s research reintroduced the disorder in 1981, but Asperger’s Syndrome was not recognized in the United States until 1994. This study, aimed at generating knowledge about the lived experience of individuals with Asperger’s, is grounded in hermeneutic phenomenology. The writings of Martin Heidegger (1962, 1971), Hans Gadamer (1975/2003), and Edward Casey (1993) provided the philosophical foundation that helped me to open up the phenomenon as I answered the question, “What is the lived-experience of individuals with Asperger’s Syndrome?” Van Manen’s (2003) six research activities served as a framework: (a) turning to a phenomenon which seriously interests us and commits us to the world; (b) investigating the experience as we live it rather than as we conceptualize it; (c) reflecting on the essential themes which characterize the phenomenon; (d) describing the phenomenon through the art of writing and rewriting; (e) maintaining a strong and oriented pedagogical relation to the phenomenon; and (f) balancing the research context by considering parts and whole.

Individuals with “Asperger’s Syndrome” navigate the world in a manner that makes sense to them. These adults desire to build nearness in what has been coined a neurotypical world. Five adults with Asperger’s Syndrome were interviewed three times each, sharing their experiences in school, the workplace, and community, elaborating upon how they attempted to fit in with their neurotypical peers. They also shared strategies developed to build nearness and find place in the neurotypical society. Participants reported experiences such as wearing masks as a tool to gain insider status in the neurotypical world, and the sense of exhaustion this behavior involves. They described their experiences with terms such as “bully magnet” and “emotional traffic jam,” in illuminating the daily discomforts they face attempting to meet the expectations of social interaction. The experience of bullying particularly seems to have had a lifelong impact.

Recommendations for further research include examining the effect of early diagnosis, and how early transition experiences contribute to social development. A study on the effects of bullying that Aspies encountered during their school years would also add valuable information to the literature. Finally, work is a significant part of every adult’s life. Recommendations for employers include exploring mentoring or natural supports to employees who disclose the disorder. Additional supports and resources would increase performance and job retention.